Jordan’s Guardian Angels
Making a rare disease legible to the people who fund research.
The Problem
Jordan's Syndrome, a rare genetic disorder caused by a mutation on the PPP2R5D gene, had been documented only a handful of times worldwide when Jordan's Guardian Angels began its campaign for California state research funding. Legislators aren't scientists, and they have a hundred other funding requests on the same desk. The material had to make an unfamiliar, dense diagnosis feel both understandable and urgent in the time it takes to skim a one-pager.
My Role
Helped shape messaging strategy for Jordan's Guardian Angels' campaign to secure California state research funding, then designed and produced the print materials. The job was turning a mutation legislators had never heard of into something they'd act on.
The Move
The material focused on what Jordan’s Syndrome looked like in a child’s everyday life, from delayed walking and difficulty communicating to sensory overload, seizures, and feeding tubes, giving legislators a concrete way into a diagnosis they had likely never encountered before. That made the condition easier to understand without asking them to first grasp the genetics behind it, and helped connect the facts of the disorder to the case for funding the research.
What Happened
California allocated $33 million across the 2018 and 2021 state budgets to support early research, bringing researchers at ten universities and hospitals into a shared effort rather than leaving them to compete individually for federal funding. That work helped pave the way for a clinical trial now underway with Shionogi. The materials I created supported the campaign as part of a broader advocacy effort led by the foundation, families, researchers, and supporters.
